Parents sue state over autism care

Saturday

Dec 29, 2012 at 12:01 AMDec 29, 2012 at 11:09 AM

CINCINNATI - The parents of an autistic toddler are suing the state Department of Health and others, alleging denial of federally mandated treatment. The case could affect how other autistic children are cared for in the state.

CINCINNATI — The parents of an autistic toddler are suing the state Department of Health and others, alleging denial of federally mandated treatment. The case could affect how other autistic children are cared for in the state.

The lawsuit, filed last week in federal court in Cincinnati, accuses the state of discriminating against children with autism and their parents by failing to provide a type of intensive treatment known as applied behavioral analysis.

The lawsuit was filed by Robert and Holly Young, of Williamsburg, about 25 miles east of Cincinnati. The Youngs’ 2-year-old son, Roman, was diagnosed with moderate to severe autism a year and a half ago.

“It’s been a living nightmare,” said Holly Young, a Miami Township police officer. “It’s heart-wrenching to know what you need to give your son and you can’t provide it, and no one will help. And the people who are supposed to help seem to be turning their backs.”

Under the Individuals with Disabilities Act, states are required to provide early-intervention services for children with autism, a developmental disorder characterized by difficulties communicating, emotional detachment and excessively rigid or repetitive behavior, among other symptoms. States get federal money to provide the treatment, with the goal of turning children with autism into self-sufficient adults who won’t have to depend on public resources.

The Youngs argue that Roman, who doesn’t speak and has other difficulties, needs 46 hours of applied behavioral analysis a week, including 33 hours of in-home, one-on-one time with a therapist. That’s based on diagnoses and recommendations the Youngs got from autism experts, including doctors at Cincinnati Children’s Hospital and Dayton-based Trumpet Behavioral Health.

The Youngs say the state has repeatedly denied their requests for the intensive therapy, offering just two hours of speech therapy a month.

“The state is condemning Roman to a life that will not be self-sufficient, that will not minimize his need for special education, and that will not maximize his potential to live independently,” according to the lawsuit, filed on Dec. 18. “The developmental time lost to Roman due to the state’s culpability cannot be regained. Roman is being irreparably harmed for life, and the harm mounts daily.”

Department of Health spokesman Robert Jennings said yesterday that he could not comment on the Youngs’ case because of the pending legal action. But he said federal guidelines don’t specifically require states to provide applied behavioral analysis. “Therefore, it is not provided,” he said, adding that the state provides a number of other treatments.

The Youngs have been using grants to pay for 15 hours of applied behavioral analysis for Roman, but Holly Young said the grants expire next month, and she and her husband, a Miami Township firefighter, have taken out loans, maxed out credit cards and gotten help from friends and family to pay for their son’s treatment.

The suit says the couple is on the brink of bankruptcy.

Jim Ball, executive chair of the national board of the Autism Society of America, said lawsuits like the Youngs’ are not uncommon in the U.S. He said parents seeking the best treatment for a child are at odds with states and school districts trying to minimize costs while following federal requirements to treat autistic children.

Access to applied behavioral analysis, widely considered the best treatment for many children with autism, is spotty across the country and often comes down to where a child is born, how well off the parents are, or how much government agencies are willing to pay, said Ball, whose organization is based in Bethesda, Md. “It’s sad to say, but in a lot of cases, it comes down to money,” he said.

The Youngs are to be in court on Wednesday arguing for a judge to order the state to immediately begin providing intensive therapy to Roman as the lawsuit proceeds.

Besides the 46 hours of therapy a week for Roman, the lawsuit seeks more than $3 million in compensatory damages for the Young family and a declaration that the state “systemically violates the rights of infants and toddlers with disabilities when it unilaterally and categorically excludes certain intensive early-intervention services.”

The lawsuit was filed three days before Gov. John Kasich expressed his support for a plan for the state to require health-insurance companies to cover therapy and treatment for children with autism starting in 2014.

Most private carriers don’t offer coverage for children with autism. Ohio’s new requirement will allow parents to get coverage through health insurance sold in the private market and in the upcoming federal health-insurance exchange; it also covers state employees. The requirement won’t include the self-insured and large group insurers.